Parenting a Sick Child Has Made Me a Chronic Worrier

I’m a worrier. I don’t worry about everything. Just my kids. My wife tells me she never has to worry about our children as I do enough of that for both of us.

In an age of free range parenting, I’m the creaky old helicopter who hovers over my kids fretting about their safety and health. While this may sound old-fashioned, I prefer to think of it as just plain cautious. I understand the benefits of a skinned knee, as the title of a well-known parenting book proclaims, but I’ve also had more than my fair share of visits to the emergency room.

If I’m going to worry, at least I’ve got something significant to worry about. I’m a Lyme parent. My 16-year-old son Will contracted Lyme when he was 11 years old. Lyme disease is a bacterial infection that’s spread through tick bites. According to the CDC, typical symptoms include fever, headache, fatigue, and in fewer than 50 percent of reported cases, a skin rash that sometimes looks like a bull’s-eye. If left untreated, infection can spread to joints, the heart, and the nervous system.

My family had no warning. We’d never seen a tick or a bite mark on Will, let alone one of those characteristic bull’s-eye rashes. One morning Will rolled out of bed limping and complaining of painful, swollen knees. In the days that followed, he suffered from headaches and fever, disorientation and fatigue. Worse, he cried often and was in an emotionally fragile state.

Despite this unfortunate break, we discovered we were among the lucky ones. Though my son’s infection had probably lasted several months, our doctors caught the disease before it infected his nervous system. His doctors treated him with a lengthy course of antibiotics and restored him to health.

So why do I still worry? Because so much is still unknown about this disease. It’s unclear whether Lyme can be fully eradicated or simply lies dormant, waiting to be re-activated like a terrorist sleeper cell. My son went through a three-month period last year when he was constantly fatigued, suffered from chills and headaches, and had difficulty falling asleep and then waking up. All classic Lyme symptoms. Did he simply have a troublesome virus as our pediatrician told us, or had his Lyme reactivated?

I worried day and night that Lyme might still be stalking my child. The thought that my talented and bright son’s potential could be compromised by an insidious disease filled me with constant dread. Kids who suffer from Lyme are often too sick to enjoy memorable events such as homecoming dances, recitals, or championship games. Others are tethered to their beds, too exhausted to play outside or with friends. Robbed of their youthful energy, they often can’t lead the full lives they’re entitled to.

No wonder I worry. The medical community itself is deeply divided regarding the best approach for treating persistent Lyme disease. Persistent, or chronic, Lyme disease refers to the condition of those patients whose symptoms continue after a short-term dose of antibiotics. One group maintains there’s no convincing biological evidence for the existence of chronic Lyme infection, and that long-term antibiotic treatment of “chronic Lyme disease” is unproven and unwarranted. Opposing groups believe current Lyme testing is largely inaccurate and likely to miss patients with chronic and ongoing infection. This group feels that long term antibiotic treatment is needed for those patients with chronic symptoms.

At least if I’m going to worry, I’m not alone. Lyme patients and their families are caught in the middle of this controversy. Many parents confront a blizzard of conflicting literature on how to treat their children or where to go for help. Others are forced to travel endless hours or across states to find a doctor adequately trained to help them, or pay thousands of dollars for treatments that are rarely covered fully by insurance.

Take the case of Janice Lynch Schuster. In a moving article published late last year in the Washington Post, (recommended to anyone wishing to learn more about Lyme disease and the controversy surrounding it), Schuster tells the story of her daughter who contracted Lyme disease when she was eight years old, but even after treatment, continue to suffer from blurred vision, joint pain, and fatigue for years. When her daughter again developed symptoms in college, the author’s plea for help resonated with me and every parent who has a child sick from Lyme:

I want help for my daughter; I want her on her feet and better. The uncertainty
in not being able to do this is frustrating, and I can imagine the challenges patients
face as they journey from doctor to doctor, looking for a cure.

Even though my son is feeling better once again, I can relate to Schuster’s plea. Although we consulted with Will’s Lyme doctor, who prescribed a number of immunity boosting supplements which seemed to help, every time I see him feeling fatigued or complaining of cold-like symptoms, my parent’s antenna go up.

What would make me worry less?

Like many other anguished parents, I don’t want to see more children suffer and lead compromised lives. I want to see medical professionals come together with an openness to new approaches, putting the needs of sick children first, and using the resources of the global medical community to find a cure for Lyme disease.

Until then, I’ll continue to write to raise awareness, and contribute to Lyme advocacy groups pushing for more federal funds to research this disease and find a cure for long-time sufferers. I’ll seek the support of my spouse and other parents who know what it’s like to have a child suffering from Lyme disease. And I’ll try not to worry so much.

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Storytelling Tips

The most frequent question I’m asked by parents is, "How do you make up a new story with your children night after night?" I tell them it is not all that hard, and that they can do it too. Here’s how to get started.